Thoughts on bad behaviour?

Kate P

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Jul 6, 2007
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Merseyside
I'm keen to know your thoughts on bad behaviour - voluntary or involuntary?

Mum's behaviour is taking a down turn again - throwing and slapping despite the increase in antipsychotic medication.

Dad and I had a debate about whether this behaviour is voluntary and therefore within mum's control or involuntary and so completely outside her control.

I'm torn - I really don't know - on some level I think this must be involuntary because surely my mother wouldn't behave like this but she only hits out at dad - she has never made any attempt to hit me at all. This would seem to show a level of control? I suppose the other factor is that this isn't my mum anymore - she's someone completely different.

Her behaviour outside of the home is beginning to slide a little - she's more likely to show her displeasure even in social situations (in the past she's always tried to cover it up).

This does seem to coincide with a down turn in her condition - mum's always enjoyed playing on the computer - in fact it's the only activity we've still been able to get her to do. As time has gone on she can only play a few games. However, in the last week she is finding it increasingly difficult to play the games at all.
 

Skye

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Aug 29, 2006
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SW Scotland
Hi Kate

Much sympathy, it must be hard to watch your mum behaving badly.

I obviously don't know to what extent it's deliberate, but I would suspect that it's more a loss of inhibition. In other words, thoughts and actions she would previously have kept to herself she now does not bother to control.

I believe that this difficult behaviour is more common in vascular dementia than in AD, though people with AD who have previously had a short temper become increasingly likely to lose it.

I wouldn't think your mum's behaviour is deliberate. At the moment she's managing to control it in public, but even this control is slipping. Combined with her general downturn, I'd think she may have slipped another notch. Sorry!

Love,
 

christine_batch

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Jul 31, 2007
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Buckinghamshire
Dear Kate,
Thinking about your Mum and her main aim is your Dad, perhaps that is because he is with her all the time.
Unfortunately, in my personal opinion perhaps the doseage of the drug is not agreeing with her.
Also bearing in mind there is the possibility of deterioration.
Can you and your Dad speak to the Doctor?
When I go to see Peter, boy bad behaviour, these Carers deserve a medal.
On Saturday Peter taken to A & E deep cut above his eye. When I got to C.H. this 4'10 lady in her late 80's told me she was going to kill me!!!

Take care of yourself.
Love from Christine
 

jenniferpa

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Jun 27, 2006
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Kate, does it really matter if this behaviour is voluntary or involuntary? That is even if she has some measure on control (in that it's directed towards your father), what can be changed? Your father is still going to be the primary caretaker, your mother still has a progressive dementia. It's possible, as others have mentioned that the medication is either no longer working or is having side effects so you should follow that up. More likely though, this is another stage of the disease and apart from seeing if you can get more assistance for your father, I'm not sure what else can be done.

I'm concerned that by focussing on control or lack thereof, you might end up spending a lot of time and energy trying to get her to modify her behaviour, which she can either no longer do, or not reliably, rather than attempting to modifying the environment (and I include drugs in that).

Edited to add: I realise that this is rather more specific and less general that the thrust of your post, but I do think we can end up getting bogged down in the "why" when actually we can't change it even if we know the "why". Not that I'm saying one shouldn't try and understand why certain things occur, because I do think frustration is at the root of many of these things, and it is appropriate to try to address that.
 
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Kate P

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Jul 6, 2007
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Merseyside
I think you're quite right - I think it is further progression of her disease.

It's so startling how quickly her condition deteriotates - we can even pin point to the day when it changes - Sunday this time!

I've never looked at it from the perspective of it not mattering whether she can control it or not. My dad and I were having the conversation because he gets so frustrated and angry with her because he believes she is "doing it on purpose" to a certain extent.

I'm generally that much calmer with her at the moment because I take the angle that she can't help it.

Plus poor dad has to cope with it 24 hours a day which of course makes it much harder.

I know that FTD is one of the most aggressive dementias so it isn't so surprising that she continues to go down hill so fast - sometimes I think it's a blessing because she won't suffer so long, sometimes I think I would have liked more time when she was still "my mum" to say my goodbyes to the mum I knew - but I guess there's never enough time for that.
 

Brucie

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Jan 31, 2004
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near London
voluntary or involuntary

Involuntary seems for a normal person to be like a sneeze - it happens; we can't easily conjure a real one up.

So that makes these 'bad' behaviours voluntary?

Not in my opinion. I think that in the same way as a sneeze is the body's way of sorting out something wrong with the nasal passages, the behaviours are the body's way of dealing with whatever situation the damaged brain thinks the person is in.

They are seeing the world through a hugely distorted lens. They may not know that. They respond to the world as they see it - what else can they do?

But people often do manipulate other people and situations according to their perception. People with dementia are no different.

So if shouting or throwing things seems strange to us, it may not be so for them. They may know it is over the top behaviour, but for them, how else can they try to make a point, when lucid speech and comprehension are very difficult, if not impossible?

Shouting is rarely an effective way to communicate and is only effective when used sparsely in punctuation. But how can they know that?

The challenge for us is to try and figure what point they are trying to make, and why.

These are just my own thoughts. Who knows what the situation really is?
 

Grannie G

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Apr 3, 2006
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All I know from my own experiences is whilst I`m still smarting from the bad behaviour, and trying to think of ways to modify it, it has changed again, and been forgotten.
 

Canadian Joanne

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Apr 8, 2005
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Toronto, Canada
Kate,
Based on my experiences with my mother, I think "bad" behaviour is involuntary. My mother has AD so it's a different cause but we end up with the same results.

I think of it as though I'm dealing with a two year old who has no control over themselves yet. For your father it's much more difficult as he's dealing with it all day. Plus, it's a common phenomenon for dementia patients to be their worst with their caregivers. Your poor father is caught in your mother's crosshairs.

Perhaps a medication adjustment can help but be careful that your mother doesn't become overmedicated.
 

Kate P

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Jul 6, 2007
565
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Merseyside
It's just so strange seeing this woman who was once in iron control of herself and her emotions lashing out in the same way as my toddler.

I think mum's lashing out is mostly frustration - further compounded by the fact that she can't speak and we are playing a very strange and tiring game of charades trying to figure out what it is that she wants or what has upset her.

I think the medication is a valid point - dad has liquid medication to try and slowly increase her dosage on the days were nothing is helping. However, on her really bad days it seems that the medication only kicks in when she'd had so much that she falls asleep.

I suppose it gives dad a bit of a breather but I know he hates doing it.

It's so unhelpful that none of our "professionals" know what to do with her or what to suggest - even our consultant has only heard of four other cases within our area!

There is a doctor who specialises in it about 50-60 minutes drive away and we have pushed dad to swap to him and we even managed to pull strings and call in favours with people we know to get him to take her but dad doesn't like to "rock the boat". Plus I don't think mum liked him because he actually used the word dementia in front of her - something dad has been avoiding because it sends mum into a monumental melt down.

Ah well we plough on as best we can...
 

Nebiroth

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Aug 20, 2006
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I don't think it;s a question of "voluntary" or "involuntary". I think it;s more a loss of inhibition and socialisation, and probably combined with changes in personality as well.

In a sense, it is like regression into childhood, because all the inhibitions are gradually lost; so we are faced with an adult that has child-like rages and tantrums. A child does not know to control the expression of these tantrums, and has not learnt to control them, or to leanr ways to express themselves in a more accetpable fashion.

This is in combination of changes in the brain that lead to changes in personality, which so often means that tempers are easily lost etc.

I also think it is partly frustration, in that someone with dementia has lost the ability to communicate.
 

Brucie

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Jan 31, 2004
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near London
In a sense, it is like regression into childhood, because all the inhibitions are gradually lost; so we are faced with an adult that has child-like rages and tantrums.

I'd go with that.

Sounds very familiar to me, beyond the context of dementia.

Adults may under all sorts of circumstances do the above, and people with dementia are no different.

I always think that dementia is purely an exaggeration of normal traits, but in the wrong place or the wrong time.
 

gigi

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Nov 16, 2007
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I agree with Nebiroth,

I am slowly learning about Dementia..via TP and my own experiences..

And Eric is in many ways a "pussy cat" compared to what some of you are dealing with..

But I am watching him regress into an anxious world of his own that he does not understand..and is unable to learn about.

It's probably very simplistic of me..but I view it as "looking after him backwards"..a child's brain is developing and eager to learn.
Eric's brain is "undeveloping" and he is unable to learn..which must be very frightening and frustrating for him while he has insight and ego.
He can no longer express emotion..so I don't know if he feels it..but he was always a kind,gentle,considerate man..
Now he SEEMS to be selfish and inconsiderate..and at times agitated..and can be pointedly rude in public(much like a child can)..
He is also very insecure without me around..and becomes agitated when I'm not here.

As the disease progresses it's easy to see how his frustration and potential loss of communication could translate into violence.

Nobody seems to know the answers, really..it's such a complex disease...and then there's the medication..

Sorry Kate..just putting in my twopenn'orth..

Please take care of yourself..

Love Gigi x
 
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jane123

Registered User
Just read ur message on your Mums behaviour Kate. We had the same problem with my Mum who has vascular dementia. Her aggression was always taken out on my Dad. She would stand on his feet, hit him, she used to threaten to throuw quite a large glass ashtray at him which thankfully she never did but it was quite scary to see your Mum who wouldn't hurt a fly would do anything for her family act in this way. We tried to introduce a carer from the EMI team but Mum pushed her one day and she never came back said she wasn't being of any help to Mum. We asked the cpn about Mum's medication being increased and thankfully she is much better although she has no careres to help and this is due I think to my Dad as much as my Mum not wanting anyone to come and and try and help. Myself and my Sister r not just battling with Mums illness but also with Dad not wanting anyone and blaming Mum saying she wouldn't take to them. Mum takes Seroquel to help with the aggression and agitation it does have another medical name but can't spell that sorry. Hope things improve regarding behaviour Kate.

Jane (from Merseyside but living in Scotland at moment)
 

Mameeskye

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Aug 9, 2007
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Hi Kate

((((Hugs)))

I used to liken Mum's behaviour to thta of my sons as I could see such similarities. A toddler lashes out with frustration etc. and I think that some of those with dementia do the same thing. I believe it requires parts of the brain to develop for a toddler to learn to control the aggression(I had a pair of biters! :eek:) I can only assume that the dementia steals this awareness from some.

As to why the lashing out happens for only particular people. Mum always lashed out at me. I liken this to a toddler always behaving well for a childminder but not for Mummy as they feel secure with Mummy and no that they can give vent to their frustrations and that Mummy isn't going to run away.

Your Mum can't help it. She is lost and frightened in a world that she doesn't understand, and while you can try some positive behviour techniques there is no saying that she would be able to gain any knowledge from them and retain it, as say a child might.

For my Mum the disease removed her inhibitions. She said what she liked (and she had always been meek and mild. She belted those who annoyed her!) It was horrible. Distraction was the best "cure" we could find.

As the disease progressed this behaviour slowly disappeared.

(((hugs)))

It isn't easy

Mameeskye

PS I do hope that you manage to look after yourself and your two little ones!:)
 

Tender Face

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Mar 14, 2006
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In a sense, it is like regression into childhood, because all the inhibitions are gradually lost;

I would wholly support this - although mum is currently less like a child than a rebellious teenager :rolleyes:...... I can sense her 'striking out' (metaphorically in terms of trying to achieve independence) and clearly cannot be told that she is not actually quite capable .... but, of course, she thinks she is!!!!!!! And of course, when things go terribly wrong, we just have to pick up the pieces - the only difference is one would hope the child/teenager would learn from their mistakes ... :(

I find it tragic seeing 'behaviours' change or becoming exaggerated so much ..... worst bit is knowing mum herself would be horrified if she realised how she was and the impact it has on others ...

Sorry, if that's not much help,

Huge hugs, Karen, x
 

Kate P

Registered User
Jul 6, 2007
565
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Merseyside
Thanks for all your thoughts, opinions and advice (and hugs!!).

I too can liken my mum's behaviour quite strongly to my daughters - if only putting mum in the "naughty corner" would have the same results.

Well, we've since had a few episodes since I spoke to you all.

On Wednesday my mum still helps out at a toddler group at our local church (which my daughter and neice attend) - parents ultimately have the responsibility for their children but it is "led" by the leaders.

Anyway, mum was given the task of helping to collect up the pcitures that the children use in their songs. She chased after my neice and very forcefully wrestled it off her. My sister tried to calm mum down as discreetly as she could (as none of the other parents are aware of mum's condition) but then mum went on to do the same to another child whose parent was furious (and rightly so I feel).

My sister and I have felt for a while that it is not appropriate for mum to attend this group anymore but dad will not tell her she can't because firstly she'll go mad and secondly it is one of his few break times. As far as we can establish the leaders of thr group feel embarrassed to say she can't come anymore.

Either one of the leaders or the vicar told dad what had happened but still didn't say she couldn't go anymore - I think they want dad to take that responsibility but I don't think he will.

He did get the CPN round who agreed mum needed another assessment with the consultant - he also told mum that they would look at changing her medication to "iron out her moods". She went mad about this and went into the dining room and started throwing things round!

I don't think the consultant will help because she knows nothing about FTD and seems to be making no effort to find out and plus the answers dad wants no one can give him (how much longer will this go on for being the big one).
 

Mameeskye

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Aug 9, 2007
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Hi Kate

(((((((hugs)))))))))

Some more for you.

Just a thought. Could you have a quiet word in the Vicar's ear and explain the problem? Maybe he would be able to come up with some alternative explanation and thing for your Mum to do..or some companionship etc.

It might take the heat off you and your family and alos maybe help your Dad with a break.

I would agree that your Mum helping out a toddler group is not ideal. I know how scarey the kids can find it when a grown up behaves irrationally. They can do it ok but they don't expect it of us.

Love

mameeskye
 

jenniferpa

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Jun 27, 2006
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Such a difficult situation for you all Kate. You know what has to be done but you're not getting any help with doing it. You're absolutely right: this is a place where your mother should no longer be.

With her loss of language and her increasing loss of socially appropriate behaviour it's a disaster waiting to happen. Ideally the organizers would speak to your father and tell him that it's not working out, but if they won't you and your sister are going to have to be the bad guys (again). You know it's quite on the cards that "forceful" will slip over to "violent". As a parent I'd be more than a little dismayed if my child had to deal with this. If I thought that you (and your family) knew it was on the cards, dismayed wouldn't be the right word - bloody furious would be closer to it. Furthermore, I'd be inclined to take legal action over it. I know that sounds very uncaring and dogmatic, but it's one thing for there to be an accident, as in accident: could not be foreseen, but this is something that could be foreseen.

Wish I could give you more of a "there, there" response, but it looks as if you and your sister are going to have to be the adults about this.

P.S. If you need to stiffen their (the organizer's) backbones you might point out their potential liability should anyone get hurt.
Love
 
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Margarita

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Feb 17, 2006
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london
've never looked at it from the perspective of it not mattering whether she can control it or not. My dad and I were having the conversation because he gets so frustrated and angry with her because he believes she is "doing it on purpose" to a certain extent.


I can understand your father in his thinking " She is doing it on purpose " because when your living in it 24/7 it does feel like that . It felt like that to me , so I would get frustrated and angry

I believe it would feel like that to anyone if they had not knowledge of a dementia symptoms.


I'm concerned that by focussing on control or lack thereof, you might end up spending a lot of time and energy trying to get her to modify her behavior, which she can either no longer do, or not reliably, rather than attempting to modifying the dementia (and I include drugs in that)

modifying the environment (and I include drugs in that)

I agree with that modifying the environment.



I hate to say this but your father attitude to wards your mother dementia could be triggering her anger at home with him ( and CPN read below ) . please notice I say "" to wards your mother dementia "not your mother .
because over the years when I modified my attitude towards my mother dementia, her temper got better . she still have out bust , but I would take her out of the environment that would trigger the out busts , she can't take being in crowed places , lots of family member around her, people taking to her in a belittling way ect ...

He did get the CPN round who agreed mum needed another assessment with the consultant - he also told mum that they would look at changing her medication to "iron out her moods". She went mad about this and went into the dining room and started throwing things round!


he also told mum that they would look at changing her medication to "iron out her moods"

I don't blame her for getting so angry in what CPN said . This is life changing for your mother in what happing to her, she can't honestly control her moods , can just imagine the frustration she must of felt in being told that . every action word spoken has a reaction .

Your think the CPN would of know better to not say that in front of her
 
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Sandy

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Mar 23, 2005
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Hi Kate,

I completely agree with Jennifer - it is a disaster waiting to happen. And from the reaction of little girl and her mother, it sounds like a minor disaster has already happened.

Even though each child's parent is responsible for their child's welfare, they have a reasonable expectation that the other adults involved in the group will treat the children in an appropriate manner.

This is not a realistic expectation for someone with Fronto Temporal Dementia (FTD) who is lacking in empathy (always essential when dealing with young children) and language.

As mothers with children in the group you should make it clear to the organisers that you do not think the current situation is acceptable, but that your father may not be in a position to take a hint. People who have not had to deal at close quarters with dementia may not realise the delicate balancing act that carers have to go through, and that sadly it can result in a loss of perspective - in relationship to risks in this case.

As Jennifer says, there are very real risks associated with legal action if a child was injured, even inadvertently, by your mother.

Have you managed to get in touch with the Pick's Disease Support Group http://www.pdsg.org.uk/? They have local groups and may be able to help you find some resources to give your father a break and perhaps locate a more experienced consultant for your mother.

Take Care,

Sandy
 

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